I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Wednesday, July 18, 2012

Remicade Roadblock

  UC = ulcerative colitis     GI = gastrointerologist     Remi = Remicade     BM = bowel movement  

About a half-hour into my fourth Remicade infusion on Monday, I started feeling a severe tightness in my chest and difficulty breathing as well as intense and painful itching inside my right foot. After noticing how flushed I was, the nurse stopped the infusion and called my GI. The doctor told her to push 125mgs of hydrocortizone and then continue the infusion at a slow drip rate. When the nurse originally stopped the infusion, my breathing slowly returned to normal, and when she gave me the shot of steroids, the pain and itching in my foot died down. After she continued the infusion, I developed some very mild itching in my feet, but that was it. That was two days ago.

Yesterday I woke up with intense fatigue, severe joint pain all over my body (could barely move my right hand), swollen fingers, loss of appetite, and a mild headache.  I took an 800mg ibuprofen (left over from my sprained ankle) which helped with the joint pain.  This morning I woke up with all those same side-effects except the headache had gone from mild to splitting and was NOT remedied with the ibuprofen.  In fact, it's still killing me as I write this.

I had an appointment with my GI this morning.  Sometimes our bodies can create antibodies against the Remicade, so she ordered the bloodwork to test for these antibodies.  However, she said that with the reactions I am having my body is no longer tolerating the Remi, and she doesn't want to risk another dose.  This means our only options left (according to tradional western medicine) are Humira (weekly injections that are only about 40% effective for UC) or surgery to remove my colon.  She knows that I am young and want to put off surgery as long as possible, so she's sending me to a couple of UC experts located at the University of California, San Francisco.

There is actually one other drug out there that the doctors don't know about.  It is an off-label use of the drug, so not really discussed in the medical community but well-discussed by patients on the UC message boards and responsible for quite a few people going into remission.  It's called LDN, or Low Dose Naltrexone.  I won't go in to all the details about how it works here on this blog, but you can find out more about it at this website: http://www.ldnscience.org/.  I asked my GI about it this morning, and she had never heard of it, which meant she was hesitant to prescribe it since she knows nothing about it.  She said the experts in the city might know more about it and that I should ask them.  Either way, I'm going to try to get on it before I try Humira or surgery.

The good news is that since I was able to complete my infusion, I have a good two months to figure things out before that dose wears off.  Wish me luck, and I'll keep you all posted when I hear from the "experts".



T H I S    W E E K ' S    H E A L T H    L O G
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My Condition: Mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.

Current Symptoms: Occasional (mild) abdominal pain, 2-3x per day.

Prescription Meds: Remicade, Asacol HD (4800mgs), nightly mesalamine enema.

Side-Effects:  Severe headache, joint pain, fatigue, loss of appetite, swollen fingers, itchy feet, chest tightness/difficulty breathing during infusion.

Supplements: Creatine, BCAAs, CLA, glucosamine, whey protein (post workout), casein protein (before bed), L-Glutamine, Omega-3, calcium, vitamin D, vitamin C, biotin, multi-vitamin.

Diet:  Breakfast - Kashi Go Lean cereal & soy milk.  Snack - Activia yogurt.  Dinner - turkey burger, sweet potato.

Exercise:  None so far this week.

Stats: Height 5'7", weight 150 lbs, body fat 18%.

Have Tried: Imuran, Lialda, Endocort, Prednisone (dependent), Canasa, Cortico-foam, probiotics, L-glutamine, licorice, various other supplements, Specific Carbohydrate Diet, FODMAP diet, various other dietary changes.


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Saturday, July 7, 2012

Update

  UC = ulcerative colitis     Remi = Remicade     BM = bowel movement  

I have now finished all of my loading doses of Remicade and am due for my first maintenance dose in about a week. For most of the time since my last post, it has been a waiting game. I was waiting for the effects of the Prednisone to wear off to see if the Remi was really going to keep me in remission. So far here are the results…

 I was symptom free until mid-June, which was about six weeks after my first Remi infusion and five weeks after my last dose of Prednisone.   At that point I saw some mild symptoms (a spot of mucous every few days, abdominal pain a few times a day, gas, and a teensy amount of blood... but BM’s stayed regular). I should admit here that this is after a few weeks of consuming my trigger foods (alcohol, coffee, chocolate) on a fairly regular basis due to Memorial Day BBQ’s and graduation/end-of-school year celebrations as well as travelling for a couple weeks. The main reason for the mild flare-up, however, was the fact that I started my period. (Luckily, I’m on a pill that limits the frequency of this issue.) Menstruation has always been a trigger for me, so my doctor and I both agreed that the best plan was to just wait for a couple weeks, let things settle down, and see if it resolves itself. Fortunately, this plan seems to be working. I cut back on the trigger substances and got into more of a regular routine with my meds, diet, and exercise, and things seem to be clearing up. The only symptom I am left with at this point is occasional mild abdominal pain. I have faith that this, too, will pass, especially since I have another infusion coming up in about a week.

 As far as how I’ve been tolerating the Remicade, things are going swimmingly. I have had practically no side-effects. The only three things that could be attributed to this new medication is a very mild sensitivity to UV (went tanning a couple times that triggered some dry/flaky skin around my mouth – resolved if I cover my face with a cloth for part of the tan), slowed healing (more on this later), and during my last infusion I experienced some mild itchiness on my hands and feet that only lasted about twenty minutes or so. Other than that, I have been blessedly free from side-effects. No headaches, no nausea, no skin issues, and I have not gotten sick at all in the three months since I started the Remi, though not for lack of opportunity. If this continues to work as it has, I will thank my lucky stars, because this is definitely doable and liveable for the long term.

 I can’t say my fitness goals have gone so well. Remember that sprained ankle? Well, it only got worse. It turned into a multiple repeated sprain, meaning it was sprained in about three locations, and I kept re-injuring it because I kept trying to run and exercise on it. So finally, two weeks before my scheduled half-marathon, I realized I was doing more damage than good and stopped exercising. The healing of my ankle has been agonizingly slow. At one point I was in so much pain I couldn’t put any weight on it at all and was hobbling around on crutches. It has gone up and down and plateaued quite a bit, and I have no doubt that some of this is due to the immunosuppressing effects of the Remi. At this point I can walk on it, but it is still a bit sore. I’m still wearing a brace at all times, and it still starts to get worse if I walk around too much on it. I have seen the doctor once already, but I’m considering going in again to get signed up for physical therapy.

 My current struggle is trying to figure out how much to exercise while not infringing on the healing of my ankle. I’ve recently been doing weight-lifting and strength-training that does not involve my ankle (no barbel squats or deadlifts! :-( Booo!) as well as swimming laps at the local gym, which I figure is pretty safe. However, I would LOVE to start running again; I’m just not sure when is a safe time to start. I’ve been dealing with this ankle injury for going on three months now, and am getting a little frustrated and anxious to get back to being my active self. It’s summer break, and I want to be out there running, biking, surfing, skating, skiing, hiking, etc.

When my ankle took me out, I spent quite a bit of time on my butt (no exercise). Pile on top of that all the BBQ’s, end-of-schoolyear celebrations, dating, and travelling, and I have gained a bit of my weight back. My body fat has gone up. However, I am *yet again* re-motivated to get back into peak physical condition. I have cleaned up my diet and started busting my butt in the gym, can barely move at times due to sore muscles… and am yet again fighting tooth-and-nail for my health and fitness.

These photos, taken a couple days ago, are what I am considering my "before" pics... a baseline for more progress pics to come.












T H I S    W E E K ' S    H E A L T H    L O G
----------------------------------------------------------------------------------------------------

My Condition: Mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.

Current Symptoms: Occasional (mild) abdominal pain, 2-3x per day.

Prescription Meds: Remicade, Asacol HD (4800mgs), nightly mesalamine enema.

Side-Effects: Very mild sensitivity to the sun, slowed healing ability, one instance of temporary itching during infusion.

Supplements: Creatine, BCAAs, CLA, glucosamine, whey protein (post workout), casein protein (before bed), Omega-3, calcium, vitamin D, vitamin C, biotin, multi-vitamin.

Diet: Breakfast – smoothie (berries, yogurt, whey protein, soy milk). Lunch – large salad with albacore tuna and low-cal dressing. Snack – protein bar or apple with natural peanut butter. Dinner – Grilled chicken breast, sweet potato.

Exercise: Mon – upper body “push” weight-lifting (45 mins), swim laps (25 mins). Tue – core/abs/lower back strength (45 mins), swim laps (25 mins). Wed – rest. Thu – legs weight-lifting (45 mins), swim laps (25 mins). Fri – upper body “pull” weight-lifting (45 mins), light jog (15 mins), swim laps (30 mins).

Stats: Height 5'7", weight 152 lbs, body fat 20%.

Have Tried: Imuran, Lialda, Endocort, Prednisone (dependent), Canasa, Cortico-foam, probiotics, L-glutamine, licorice, various other supplements, Specific Carbohydrate Diet, FODMAP diet, various other dietary changes.


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